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Poverty and HIV/AIDS:
Impact, Coping and Mitigation Policy *
(e-mail: [email protected] and [email protected]) Summary: This chapter looks at the relation between HIV/AIDS and poverty and tries to
say something about the relation between poverty and HIV/AIDS: a difficult task as there is
little in the way of conclusive or persuasive research. An important finding is that mitigation
of the impact of AIDS is so far rather poorly documented – which is not say that there is not a
multitude of mitigation responses, just that few of them are recorded and most remain at the
communal or household level.
AIDS is a very long wave event. The true death toll cannot be estimated until the full wave
form of the epidemic has been seen. It may be as long as 50 years before we can say that the
world epidemic has peaked and/or begun to decline. If we take into account its social and
economic impacts, in particular HIV/AIDS related impoverishment, then HIV/AIDS impact
related deaths have already reached very large numbers indeed. The wave form of the socio-
economic impact alters the historical trajectory of some societies. The epidemic is a
development crisis, which deepens poverty and increases inequality at every level, from
household to global. AIDS has reversed progress towards international development goals.
Like sustainability, the idea and language of “coping” has to be questioned in relation to
AIDS and its impact. The policy implications of the chapter are that we need to better
understand the long wave implications of this disease and think about more than “coping”.
The HIV/AIDS epidemic has social roots and needs social as well as medical and technical
responses.
* This study presents the views of its authors and not the official UNICEF position
in this field.

UNICEF-IRC (www.unicef-icdc.org) Florence, June 2002 -------------------------------------------------------------------------------------------------------This is chapter 11 of the overall study “AIDS, Public Policy and Child Well-Being”edited by Giovanni Andrea Cornia.
CHAPTER 11: POVERTY AND HIV/AIDS: IMPACT COPING AND MITIGATION POLICY AIDS, PUBLIC POLICY AND CHILD WELL-BEING *
Table of contents
Introduction - Giovanni Andrea Cornia Part I: Overview of the HIV/AIDS Impact and Policy-Programme Responses 1. Overview of the Impact and Best Practice Responses in Favour of Children in a World Affected byHIV/AIDS - Giovanni Andrea Cornia Part II. The Social and Economic Impact of HIV-AIDS on Children: 2. The Impact of HIV/AIDS on Children: Lights and Shadows in the “Successful Case” of Uganda -Robert Basaza and Darlison Kaija 3. The Impact of a Growing HIV/AIDS Epidemic on the Kenyan Children – Boniface O.K’Oyugi andJane Muita 4. The Socio-economic Impact of HIV/AIDS on Children in a Low Prevalence Context: the Case ofSenegal -Cheikh Ibrahima Niang and Paul Quarles van Ufford 5.HIV/AIDS, Lagging Policy Response and Impact on Children: the Case of Côte d’Ivoire -Jacques Pégatiénan and Didier Blibolo 6. The Current and Future Impact of the HIV/AIDS Epidemic on South Africa’s Children – Chris Desmond and Jeff Gow 7. Perinatal AIDS Mortality and Orphanhood in the Aftermath of the Successful Control of the HIVEpidemics: The Case of Thailand - Wattana S. Janjaroen and Suwanee Khamman 8.HIV/AIDS and Children in the Sangli District of Maharashtra (India) - Ravi K. Verma, S.K.Singh,R.Prasad and R.B.Upadhyaya 9. Limiting the Future Impact of HIV/AIDS on Children in Yunnan (China)China HIV/AIDS Socio-Economic Impact Study Team Part III: The Sectoral Impact of HIV-AIDS on Child Wellbeing and Policy Responses 10. The HIV/AIDS Impact on the Rural and Urban Economy - Giovanni Andrea Cornia and Fabio Zagonari 11. Poverty and HIV/AIDS : Impact, Coping and Mitigation Policy - Tony Barnett and Alan Whiteside
12. Mitigating the Impact of HIV/AIDS on Education Supply, Demand and Quality - Carol Coombe 13. The Impact of HIV/AIDS on the Health System and Child Health - Giovanni Andrea Cornia,Mahesh Patel and Fabio Zagonari 14. Increasing the Access to Antiretroviral Drugs to Moderate the Impact of AIDS: an Exploration ofAlternative Options - Pierre Chirac 15. The Impact of HIV/AIDS on Orphans and Program and Policy Responses - Stanley Phiri and
Douglas Webb
___________________________________________________________________________________
* This project was started in 2000 at the UNICEF’s Innocenti Research Centre under the leadership of the Director
of the Centre and of the Regional Director of the Eastern and Southern Africa Region Office (ESARO) of
UNICEF. Giovanni Andrea Cornia of the University of Florence took care of the framing, implementation and
finalisation of the study , with the assistance of Leonardo Menchini. The project could not have been implemented
without the support of many colleagues in many UNICEF offices around the world. The financial support of the
Italian Government and UNICEF ESARO is gratefully acknowledged. The papers included in this study
present the views of their authors and not those of UNICEF.

Introduction: Situating HIV/AIDS Related Poverty
In this paper we are able to say a great deal about the relation between HIV/AIDS andpoverty and something about the relation between poverty and HIV/AIDS. We willdiscuss attempts to mitigate the poverty inducing impact of AIDS, although so farlittle has been done, at least on a national basis. Families and communities have hadto respond through necessity but in most cases their responses, described as “coping”,have gone undocumented. There is a huge and – twenty years into the epidemic – disgraceful lacuna in what weknow about HIV and poverty, both the ways that the epidemic exacerbates povertyand the reverse. In fact very little is known about the more general relation betweeninfectious disease and poverty. With regard to HIV/AIDS and poverty, little is knownat the analytical level, less is known, or at least “known” to academic and agencypersonnel, about the policy and practical implications. Even where there isinformation we need to recognise that we are only 20 years into what will be a longwave event whose effects will be felt for generations to come. HIV/AIDS is a verylong wave event as compared to an epidemic of influenza. The true death toll cannotbe estimated until the full wave form of the epidemic has been seen. It may be as longas 30 more years before we can say that the world epidemic has peaked and/or begunto decline. If we take into account the social and economic impacts of the epidemic,in particular HIV/AIDS related impoverishment which is the focus of this paper, thenthe epidemic and its impacts can be considered as an event which lasts as long as acentury.
AIDS deepens poverty and increases inequalities at every level, household,community, regional and sectoral. The epidemic undermines efforts at povertyreduction, income and asset distribution, productivity and economic growth. AIDShas reversed progress towards international development goals because of theinfluence it has on all development targets (see chapter 1 of this compilation ofstudies).
Responses to the epidemic seem to chase rather than lead it. Apart from persistentfear, denial and stigma, there is still lack of clarity on biological, social, economic anddevelopment relationships and HIV, and what is known may be poorly implemented.
While prevention must remain a priority, the reality is that the impact of the diseasemust be mitigated. AIDS has already become the number one cause of death in manyparts of the world and the impacts due to illness, death and orphan-hood are in factjust beginning The Relationship between Poverty and AIDS
There is an undoubted relationship between poverty and the development ofepidemics of communicable disease and at the same time epidemic disease – like anyillness – has the potential to increase poverty.
CHAPTER 11: POVERTY AND HIV/AIDS: IMPACT COPING AND MITIGATION POLICY Stillwagon, has recently convincingly argued “that HIV prevalence is highlycorrelated with falling calorie consumption, falling protein consumption, unequaldistribution of income and other variables conventionally associated withsusceptibility to infectious disease, however transmitted.” (Stillwagon, 2001). Thecausal chain runs from macro-factors that result in poverty: through the community,the household, the individual and into the resilience of the individual’s immunesystem. Work in cell biology has shown the mechanisms which connect malnutritionand parasite infestation, depress both specific and non-specific immune responses byweakening epithelial integrity and the effectiveness of cells in the immune system(Stillwagon, 2001). Protein-energy malnutrition, iron deficiency anaemia, vitamin-Adeficiency, all of these poverty related conditions decrease resistance to disease ingeneral and to HIV in particular.
Figure 1 shows some of the general relationships. Each column is an area wherepolicy interventions can be hypothesised can be and tested. The shaded columns arethose where poverty based interventions are appropriate.
Figure 1: Proximal and Distal “Causes” of HIV/AIDS
Determinants
Distal determinants
Proximal determinants
Behaviour
environment
environment
Interventions
Source: Barnett, Whiteside, Decosas, 2000.
Poverty contributes to epidemic disease and epidemic disease contributes to poverty:causation is bi-directional and occurs through many different pathways. For example,loss of labour from a farming system may result in failure to maintain infrastructuresuch as terracing, leading to soil erosion, and decreasing agricultural productivity.
This will impoverish households and communities, reduce their ability to sustainthemselves and resulting in poorer socialisation, less formal education and ultimatelycultural as well as material impoverishment. Although the problem of AIDS related impoverishment might usefully be thought of as a livelihood problem, this frameworkwill ultimately turn out to be limited. A livelihood approach will only provide anentry point to a problem that is much wider. This perspective has applications beyondHIV/AIDS and will be relevant to consideration of the effects of other communicablediseases.
That the HIV/AIDS epidemic impoverishes people, their households, communitiesand enterprises is by now widely accepted. What is not well understood is how it actson different social and economic units, how these interact with each other, and howwe can better understand these effects and processes. There has been surprisinglylittle work on this problem.
HIV/AIDS leads to financial, resource and income impoverishment. Householdsbecome poorer as a result of the illness and death of members, and in many cases it isthe income-earning adults who are lost. However impoverishment is more thanfinancial. Illness and death leads to an erosion of social capital and sociallyreproductive labour. In other words, we are bound to consider impoverishment as acharacteristic of systems rather than solely of commonly identified social andeconomic units. The notion of social reproduction is of greatest importance. It is notthe same as “social capital”. The term is used to refer to the effort that goes into thereproduction of social and economic infrastructure. To give one example, we maythink of market systems. At the purely economic level, a market is a mechanismwhereby goods and services are exchanged through a process of price setting. At thesocial level, this system consists of a wide variety of relationships including forexample: physical infrastructures, beliefs about trust, rituals of bargaining and pricesetting, mechanisms for regulating weights and measures, means of resolvingdisputes, and repeated activities which ensure that all these things continue to exist.
These are not solely matters of economic activity. They include the maintenance anddevelopment of institutions, the reinforcement of systems of belief and thecontinuation of physical infrastructure and channels of communication. The effortthat maintains these is the work of social reproduction. Death and illness means thatsome of these activities will no longer be possible or will be done less effectively.
Poverty is also about more than income and economics. There are many types ofpoverty: § service poverty, where people are unable to access or are not provided with services such as health and education; § resource poverty, where though they have sufficient incomes people are unable to access resources because they may be poor in terms of theirrights, representation or governance.
For reasons of space, we focus on income and social capital in this paper. This is notto say that other forms of poverty are unimportant. AIDS will affect them as well andthese are areas where further research and discussion are necessary, not only inrelation to AIDS but in relation to the impact of infectious diseases more generally.
CHAPTER 11: POVERTY AND HIV/AIDS: IMPACT COPING AND MITIGATION POLICY The Impact of AIDS on Poverty
The pathways of impact are illustrated on Figure 2. The first and worst impact is atthe level of individuals and households. In the longer term there may be a macro-economic impact (see chapter 10 of this compilation of studies). The precise scale andmagnitude of macro-impact will depend on the number and location of the micro-level impacts. Early attempts to identify and predict macro effects were seen as a wayof justifying action. If it could be shown that AIDS would cause national economicgrowth to slow then it would perhaps be easier to make the political case for policyintervention.
Figure 2.Pathways to Economic Impact
I N D I V I D U A L
MACRO-ECONOMY
p o p u l a t i o n
H O U S E H O L D
M O R T A L I T Y
L A B O U R
M A R K E T

C h a n g e i n
a g e s t r u c t u r e
F I R M / S E C T O R
M O R B I D I T Y
G O V E R N M E N T
P r o d u c t i v i t y
S o u r c e : C h r i s D e s m o n d , H E A R D
2 7 A u g 0 1 - R e p o r t I : E p i d e m ’ g y & L i t . p . 3 5 Macro-economic Impact
In the late 1980s and early 1990s a number of studies looked at the macro-economicimpact of AIDS. These suggested that national economies would grow more slowlyas a result of the impact of HIV/AIDS (Over 1992, Cuddington, 1993). But thesestudies were based on modelled impact rather than observation. There was littleadditional work in this area until 2000. Why the renewed interest? The answer is: • The scale and speed of the epidemic has been worse than expected.
• Known demographic effects are now such that recognition of economic • There is evidence of impact at micro-levels, making macro impacts credible.
• The complexity of disease impact and the scope of its consequences are better understood. For example loss of key government workers means work is notdone efficiently, investment is reduced, and economic growth slows.
• The development consequences of the disease are becoming apparent, in these circumstances there must be a macro-economic impact.
At third general level of analysis, World Bank economist Rene Bonnel estimatesAIDS reduced Africa’s economic growth by 0.8 percent in the 1990’s (Bonnel, 2000).
HIV/AIDS and malaria combined resulted in a 1.2 percentage point decrease in percapita growth between 1990 and 1995.1 In two countries, South Africa and Botswana,there has been some rigorous national level analysis (Quattek, 2000, Arndt and Lewis,2000, Bureau for Economic Research, 2001; BIDPA, 2000). The conclusions of theseanalyses are that AIDS will cause the economies to grow more slowly. Householdincome and expenditure will decrease as will government revenue and domesticsavings. One of the South African studies suggests that the main reasons are the shiftin government spending towards health, which increases the budget deficit andreduces total investment and slower growth in productivity. (Arndt and Lewis, 2000).
In Botswana a report on the macroeconomic impacts of HIV/AIDS (BIDPA, 2000),(one of a number of studies on HIV/AIDS impact) focused on the effect of HIV/AIDSon GDP growth and per capita incomes from 1996 to 2021. It predicted GDP growthwould fall from 3.9% a year without AIDS to between 2.0% and 3.1% a year withAIDS. After 25 years the economy would be 24% to 38% smaller.
It is increasingly recognised that conventional economics misses the complexity andfull significance of the epidemic. (MacPherson et al., 2000; BER, 2001). When theepidemic was in its early stages projections based on scenarios computed 'with AIDS'and 'without AIDS’ were reasonable. Such comparisons are no longer valid. “Theimpact of the disease cannot be treated as an 'exogenous' influence that can be 'tackedon' to models derived on the presumption that the work force is HIV-free. HIV/AIDShas become an 'endogenous' influence on most African countries that has adverselyaffected their potential for growth and development. In some cases, such as Zambia,Zimbabwe, and the region covering the former Zaire, the spread of HIV/AIDS mayhave already undermined their ability to recover economically”(BER, 2001). AIDShas the potential to push economies into decline and then keep them there. “Thereduction in savings and loss of efficiency associated with the spread of the disease isakin to ‘running Adam Smith in reverse’ (BER, 2001).
Thus we have seen the significance of AIDS impact at the macro-economic level.
There are however additional consequences which have rarely been considered in theliterature. These include particular the strong possibility that governments will havefewer resources to spend on poverty alleviation and social services at the very pointwhen demand for those services is most likely to increase. In Botswana the increaseddemand for resources and the likely reduction in revenue have been calculated. TheGovernment will have to spend between 7 and 18 percent more by 2010 because ofAIDS, assuming current levels of service are maintained. The greatest share ofspending will go to health care followed by poverty alleviation. Revenue in Botswanais predicted to fall by 9.6 percent – and this is a relatively protected economy becauseof the country’s huge diamond deposits. South African government revenue will be0.7 percent lower in 2000 than in the absence of AIDS. By 2011 it will be 4.1 percentlower. (Quattek, 2000).
1 Recent work by the Liverpool School of Tropical Medicine suggests that the interactions betweenmalaria and AIDS may be marked. The rates of malaria fever rose sharply with falling CD4 cell counts.
The data suggest that with worsening immunosuppression caused by HIV/AIDS, protective immuneresponses to malaria in adults are progressively lost. (Gilks, personal communication 2000) CHAPTER 11: POVERTY AND HIV/AIDS: IMPACT COPING AND MITIGATION POLICY Finally the consequences for those not directly affected by AIDS will be considerable.
They will have to bear the consequences of the general slowdown in economicactivity, erosion of government revenue and capacity, and other associated effects ofthe epidemic.
Poverty Impact at the Household Level
Household and community level impacts are most serious when considered within themacro-economic context sketched above. The BER in South Africa warned that “ themacro results may conceal more substantial negative impacts at a more disaggregatedlevel”, (2001 p.42). Despite this type of statement, there is a paucity of information onthe impact of HIV/AIDS on poverty or on policy to mitigate it. What there is sparseand uncoordinated. Indeed, it may be said that economic modelling, despite its well-known flaws, at least provides a baseline for discussing the poverty implications ofthe disease. In contrast, existing household studies tell us very little and there havebeen very few attempts to model the impact of AIDS on households (Bechu, 1998,341-8). From the limited household studies, it can be concluded that the effect ofillness and death on poverty in households depends on: • The number of cases the household experiences - this is where clustering becomes • The characteristics of deceased individuals: age, gender, income and cause of • The household’s composition and asset array • The community’s attitudes towards helping needy households and the general availability of resources - the level of life - in that community.
• Broader resources available for assistance to households - from the state or Community Based and Non-Governmental Organisations, CBOs and NGOs.
The Limits of Household Studies
Household studies have limitations. These are: • Even in the worst affected areas adult illness and death is comparatively rare; • Because HIV is sexually transmitted it clusters in households. The average household in a community will not be affected in any given year. This can beillustrated with a simple example. In a village of 100 households with an averageof three adults per household, in a region with 10 percent HIV prevalence and amature epidemic, we would expect to see three to five adult deaths per annum. Itis likely that only one or two households will experience illness or death in anyone year. However impact will ‘accumulate’ in the community.
• Most of the studies deal with Africa; • Most are of rural households. Why this is so is unclear. It may arise from a basic paradox: foreign researchers want to work in rural areas, which, they believe,represent the “real” Africa, and prefer to avoid places which are squalid or dangerous like poor parts of large cities. But in Africa and South Asia nearly athird of the population lives in urban areas. (UNDP, 2000, page 226).2.
• As their titles indicate, in most cases they are economic studies.
• Most frame the problem as a household study and depend exclusively on survey methods, thus failing to capture the most seriously affected households, those thathave disappeared before the survey.
• Policy makers, politicians and agencies often demand quantitative survey based studies because they have the ring of a form of evidential ‘truth’ which coincideswith the demands of funders’ referees who are often academics. Such forms of‘truth’ although valid are partial and do not tell of the underlying misery.
• Single or even multi-visit surveys unsupported by ethnographic methods tend to underestimate impact and tell us little about processes of impoverishment.
• Commonly used survey methods fail to capture the dynamics of household and intra-household allocation and relations which underlie household decisionmaking (Chong 1999, Rugalema, 1999).
• AIDS may be seen as the major problem by the researcher – who has written and submitted a research proposal or is responding to a terms of reference or scope ofwork document. Communities and households may not have the same perceptionof its importance. This was illustrated by a Zambian study which looked at howchildren were valued in a situation of environmental and social change, The socialchange identified by the researchers in an area with 14.8 percent HIV prevalenceamong ANC attenders was increased morbidity and mortality due to the epidemic.
They concluded “research methods used in the study villages found that there wasalmost no link made in people’s minds between HIV/AIDS and either the value ofchildren or fertility. At present AIDS is not seen as a major problem by themajority of people, despite its recognition as a worrying disease.” (Barrett andBrowne, 2000 p22) • Measurement of impact of HIV/AIDS on poverty is difficult. The effect of illness ranges from not feeling very well to complete inability to function. It is difficult tounravel these subtleties with survey methods because: surveys of “households”will not collect data on complex relations between clusters of households; and the“household” may not be the appropriate unit of analysis for understanding povertyeffects of AIDS related events.
• Finally the epidemic and its impact are still evolving. The HIV epidemic may have run its course only in Uganda and Thailand. In all other countries HIVprevalence continues to rise and the number of AIDS illnesses and deaths willfollow suit some years hence. Thus surveys are trying to measure and quantifysomething that is still to happen.
Short Term Poverty Impact
Often the first sign of infection is when the youngest child (infected in vitro) fails tothrive, and dies. The mother is likely to have been infected by her partner. It isestimated that 60 to 80 per cent of African women with HIV have had only onepartner but were infected because they were not in a position to negotiate safe sex orprevent their partners from having additional sexual contacts. (Colvin, 2000). Thenext death is often that of the father followed by the mother.
2 According to the 2000 United Nations Human Development Report 32.7 percent of the populations ofboth sub-Saharan Africa and South Asia are urban.
CHAPTER 11: POVERTY AND HIV/AIDS: IMPACT COPING AND MITIGATION POLICY The illness has two effects on household resources and income. No matter who is illthey will need care, medicines, treatment and possibly a special diet. All this costsextra money. When the person dies the funeral will be a further drain on resources.
The second impact is felt if the person is an adult. Their illness and eventual deathwill deprive the household of labour. This may be income earning or unpaid labour onthe farm or labour used in caring for the family.
Understanding the time scale of impact
The impact on households is long term. It begins with illness as additional resourcesare required for care and household labour is reduced. Unlike with many (if not most)illnesses the person affected will not recover but periods of illness will increase infrequency, duration and severity requiring more care and, if the person is a labourprovider, it results in a greater household labour deficit . Usually there will be morethan one case in the household thus the pattern of illness and impoverishment may berepeated.
If the household dissolves then dependents, usually children but sometimes theelderly, either have to fend for themselves or are taken in by other household. Wherecare is provided by others this means that in many instances fewer resources will beavailable to their own members. Examples include grandmothers in South Africamaking do with a pension of less that $100 per month and caring for one or twochildren. As the number of dependents increases so resources are stretched thinner.
The net effect is that there is less for everyone.
Income, Consumption and Expenditure Patterns.
What effect does AIDS have on household expenditure and consumption patterns? Anadult illness or death reduces household income. Less labour is available, not onlybecause the affected individual can’t work but also because time is diverted to care ofthe sick. Illness increases expenditure on medical care, food, washing materials etc.
There are limited studies of the effects of AIDS on households and most focus oneconomic impacts of death rather than illness. These paint a bleak picture. The classicsurvey-based study was in the Kagera region of Tanzania in the late 1980s and early1990s by the World Bank with Tanzanian co-investigators3. With regard to adultdeath the Kagera study (World Bank, 1997) found households experiencing an adultdeath spent less during the person’s illness, but that a greater percentage of theirexpenditure was on medical care. They spent 33 percent less on non-food items suchas clothing, soap and batteries and their food purchases decreased. Income wasdiverted but may also have been reduced as the number of hours worked was cut(World Bank, 1997, 213).
3 The study was a four round panel survey between 1990 and 1994. The survey looked at the impact ofadult mortality and a total of 913 households were interviewed at least once with 759 householdcompleting all four waves. The study was funded by USAID, Danida and the World Bank ResearchCommittee. The findings have unfortunately neither been fully analysed nor published although somehave been presented in various fora including international conferences. The most accessible accountcan be found in World Bank, 1997. Some further findings were discussed in Lundberg and Over, 2000.
In South Africa the Bureau of Economic Research modelled the impact of the AIDSepidemic on final household consumption expenditure. This is shown below. Theseresults suggest that total final household consumption expenditure is slightly higher inthe AIDS scenario over the period 2002-2010. This is explained by increasedconsumer spending on health care products and services (non-durable goods andservices spending), use of personal savings and positive employment effectsassociated with the government and companies' efforts to combat the epidemic. (BER,2001, 33) Table 1: The impact on final household consumption expenditure (FCE) (% difference in constant
price levels of AIDS and non-AIDS scenarios.
Evidence from both Kagera (World Bank, 1997) and Cote d’Ivoire (Bechu inAinsworth et al, 1998) indicates that households are resilient and there is a partialrecovery in levels of consumption as time passes after the death. In other wordshouseholds “cope”. However, our experience and that of others has been thatanecdotal evidence often shows they do not cope, or that ‘coping’ may turn out to beanother way of saying “desperate poverty, social exclusion and marginalisation”.
There is an unresolved problem: existing quantitative studies indicate effective copingwhile anecdote makes us believe otherwise. And recent work from Zambia supportsthis view. A five-year retrospective study of 232 urban and 101 rural AIDS affectedfamilies found that “One of the striking features of the economic impact of AIDS inaffected families in Zambia is the rapid transition from relative wealth to relativepoverty” (Namposya-Serpell, 2000, p1) 4. This was particularly marked where a fatherdied (70 percent of the recorded urban deaths). Monthly disposable income of morethan two-thirds of the families in this study fell by more than 80 percent.
Household surveys underestimate the degree of household dissolution and failure.
Mutangadura’s (2000) study of 215 households in Manicaland, Zimbabwe examinedhow adult deaths may cause the dissolution of households. She found that about 40percent of the sample households had taken in orphans who had lost both parents.
More strikingly she states that: “Sixty five percent of households where the deceasedadult female used to live before her death were reported to be no longer in existencein both the urban and rural sites” (Mutangadura, 2000, 11). This lends weight to thesupposition that often the worst impact is invisible because it is among those who arenot counted.
Death is expensive. In Kagera households, medical expenditures were higher whenAIDS was the cause of death. But ‘strikingly for all groups except men with AIDS,medical expenses were overshadowed by funeral expenses. On average, householdsspent nearly 50 percent more on funerals than they did for medical care…. InThailand … just as in Tanzania, the households spent much more on funerals than on 4 AIDS-affected was defined as a family in which one or both parents and/or major breadwinner dieddue to AIDS in the five year period from January 1991 to December 1995.
CHAPTER 11: POVERTY AND HIV/AIDS: IMPACT COPING AND MITIGATION POLICY medical care.” (World Bank, 1997, 211). It should also be remembered that while thestate may make some contribution to health care and medical expenses, home careand funeral costs fall entirely on households.
One method by which households cope is by sale of assets. Table 2 summarises dataon how adult death is linked to households’ disposal of assets from Kagera, Tanzaniaand Rakai, Uganda.
Table 2: Asset Ownership in Households with and without an adult death (% of total households)
(World Bank, 1997, 217)
Around the city of Chiang Mai in northern Thailand, 41 percent of households wherethere had been an adult death had subsequently sold land. Fifty seven percentreported some other form of what economists euphemistically describe as “dis-savings”, while 24 per cent borrowed money. (World Bank, 1997, 218). In Zimbabwe24 percent of households said they had sold assets to cope with the death of an adultwoman with “the main assets being sold being cattle, goats, furniture, clothes,televisions, poultry and wardrobes”. (Mutangadura, 2000, 15).
For rural and poor urban households to survive it is crucial that they do not dispose ofproductive assets which are necessary for recovery and reconstruction. The assetsdescribed in table 2 are mainly consumer goods, a household can sell a radio andsurvive. The question is what happens when productive assets – a plough, oxen orseed stock are sold. The implications for the future of such households must be bleak:they can no longer maintain and reproduce themselves.
Whatever the case, two points should be noted. The first is that people who are drivento sell the clothes of the dead or their own clothes can hardly be said to be coping:these are the actions of the desperately impoverished. And, following from this, wehave to be aware that the very notion of “coping” is deeply ideological and maysmack of the rich telling the poor how to manage their poverty (Rugalema, 2000).
Household Reproduction, Size and Structure
What effect does the epidemic have on household reproduction, the household’sability to sustain itself from day to day and to reproduce itself over time? Thedemographic impacts on households affect their ability to reproduce themselves at all.
Households with adult female infections experience lower birth rates and higherinfant and child mortality rates. In households where a parent or both parents haveAIDS, the likelihood is that fewer children will be born and a significant proportion ofthose who are will die very young. Inevitably this means that the personnel of thehousehold are not reproduced and neither are the life-ways and traditions of thathousehold.
That the structure of a household experiencing a death will change is axiomatic. Itmight be assumed that one unit – the deceased - would reduce its size. Howeverevidence from a number of studies suggests that in practice the change is hard topredict. In Kagera, most households experiencing a death added at least one memberwhen a previously absent member or non-member joined. The average size of thesehouseholds declined by less than one - from 6 to 5.7 (World Bank, 1997, 215). InRakai, Uganda, by contrast, mean household size fell from 6.4 to 4.7 (Menon et al,1998). People left the household, perhaps children were sent to stay with relatives oradults moved in search of employment. In Thailand the decline was from 4.1 peopleper household to 3.1, the decrease being equivalent to the death of the one person(Janjaroen, 1998). The significance of this has not been evaluated but it should drawto our attention the regional and national effects of large numbers of deaths in acommunity.
Deaths in individual households have implications for other households because oftheir interdependence. Rugalema (1999) shows how coping mechanisms becomeincreasingly weakened as more households in a community are affected andcommunal support networks are less and less able to cope.
It has been argued by some that an entity called “the extended family” will absorb theorphans and destitute created through AIDS related mortality. This view has beenheard from people ranging through senior policy makers in international agencies topoliticians in Africa and Asia and people in local communities. It is now heard less asthe full effects of the epidemic become apparent. The reasons for this are: : • the extended family is variable, it is dynamic and can become more or less extended depending on resource availability; • ideological, it is something people want to believe because it validates their • ideological because belief in it relieves politicians of responsibility for thinking through the implications of the epidemic; • households do reach a point where they can no longer cope.
Affected households will try to adapt. One way in which they do this is by changingtheir composition. Three key points must be made: • Societies where extended households are the rule or where clusters of households operate together to pursue a common livelihood strategy may be more robust inthe face of adult death.
• Sending children to stay with relatives means the effect of the adult death will be felt beyond the sending family. Whoever takes care of the children can expect toexpend resources.
• Orphans need care, either in other families or through some form of public support. Increasingly they do not receive this support.
New forms of household are developing as a response to the impact of HIV/AIDS.
some of the more unique responses include elderly household heads with youngchildren, grandparent headed households; large households with unrelated fostered ororphaned children attached; child headed households; cluster foster care – where agroup of children is cared for formally or informally by neighbouring adult CHAPTER 11: POVERTY AND HIV/AIDS: IMPACT COPING AND MITIGATION POLICY households. Unfortunately where care is not available children are increasinglyitinerant, displaced or homeless often in groups or gangs or found in subservient,exploited or abusive fostering relationships Hunter, 2000, 195).
The Unmeasured Impact on Poverty
Economic studies of impact have understandably tended to focus on “economic”variables. Economics studies what economics studies. But the impact of HIV/AIDSon poverty goes beyond these relatively easily measured and familiar variables. Inparticular it engages with what may be called relational good, public goods and issuesof social reproduction (Barnett,Whiteside and Desmond, 2001). Social relationscontribute to wellbeing. They may be: • goods which have characteristics of being “public” or “common” (like, for It may not be possible to supply the former category through markets, depending onwhether a relationship, which is the good, is provided through a market. For examplea foster parent provides care and support and parent provides love as well. Can moneybuy love, how do you cost a cuddle? The latter is not supplied or is under-supplied bymarkets because individuals and corporations have little incentive to supply thosegoods. Relational goods can be final consumption goods (i.e. valued for themselves)and/or intermediate goods (e.g. certain social relations may facilitate co-operation andtrust). Social relations can be a source of value in themselves (Sugden, 2000a, Bruniand Sugden, 2000).
The effects of loss of such goods are apparent at the household and community levels.
The study of households and their interaction has long been an area of research forsociologists and anthropologists. There is information on how households cope withshocks and respond to disease. However AIDS is new and different. AIDS affectedhouseholds have to cope with more than one death, because the disease clusters. Theyalso have to deal with a long and debilitating illness that is costly in its use ofresources – both financial and time, and which ends in death. In addition, theepidemic has a wider effect weakening the ability of the community to lend support.
An in-depth study of the impact of the disease in Bukoba district of Tanzania(Rugalema 1999) illustrates the stark impact on households. In the study community32 percent of households were AIDS afflicted – they had experienced direct illness ordeath of one or more of their family members in the last 10 years. A further 29percent were affected “in the sense that although they have not experience directdeath or illness of a household member from AIDS, they have experienced rippleeffects … include (ing) fostering orphans, providing labour or cash to help care for thesick person, and providing for survivors in an afflicted household.” (Rugalema, 1999,73).
The worst impacts will be felt in households and clusters of households. It is here thatcosts of the disease have to be borne. It is here that mitigation interventions have to be located if they are to be cost effective and sustainable. It is here that socialreproduction occurs at its deepest level: in the stories told by parents and grandparentsto their children, in the giving and receiving of affection, in the taking andrelinquishing of responsibility. It is also here that the state and large multilateralagencies have most difficulty responding. The scale is too small and the variability incircumstance too great to be covered by large programmes. The great danger is that itis here – where it is most needed and where the very long term costs are stacking up -that response to impact will be impossible because there is no way of dealing withsmall scale and large variability. This is a major policy challenge.
The Intergenerational Bargain
Another area where the loss of relational goods is significant is in the relationsbetween the old and the young. The HIV/AIDS epidemic has altered and willprogressively alter the demographic structure of many societies (Low-Beer et al;1997; Stover, 1998). These demographic changes are indicative of long termimpoverishment, as relations of intergenerational support become eroded orimpossible.
Under normal circumstances the young are cared for by their parents, who laterprovide support for their own parents. Some social scientists describe this as the“inter- generational bargain” (Carmichael and Charles, 1999; Collard, 1999). In Greektradition this has been likened to a vine, where the young adults stand straight andfirm as the new shoots climb up and the old ones make their way down to the earth. Ifyou take out the middle support the children can’t climb and the old collapse.
This is one of the core and most important bargains made and maintained betweenpeople. It is a basis on which social order is constructed: its destruction points toimpoverishment far beyond the material. In most societies there is no social pensionor welfare and while people may accumulate assets during their productive yearsthese are often not, on their own, enough to provide for old age.
Care of the aged is a global issue. In all societies people are living longer, or at leastthey were before the advent of AIDS. In wealthy societies there is increasing concernabout how to respond to ageing populations. Here, the problem is the potential burdenof care and supports which the young face in caring for the increasing number ofelderly. In the poorer, AIDS affected countries, life expectancy may be falling but thisoverall figure disguises the fact that people who reach their 50s and 60s have a muchbetter chance of living into their 70s and 80s. AIDS impact is therefore being felt in asetting where ageing and care for the elderly were already issues of concern. It makesa bad situation worse.
The effect of AIDS on the young needs to consider all who are AIDS affected. Theclassic definitions of an orphan by UNAIDS is “a child under 15, who has lost eitherboth parents (double orphan), or the mother (maternal orphan), and it is from thisdefinition that the UNAIDS global estimation is made”. This underestimates the ‘true’number of orphans. In addition the definition needs to be expanded to considerchildren who are affected – prior to the death of parents and also to children inhouseholds that take in affected children. Definitions are important and there is nofinal way of deciding who is or is not an orphan, it is a social role and varies from CHAPTER 11: POVERTY AND HIV/AIDS: IMPACT COPING AND MITIGATION POLICY place to place and culture to culture and impoverishment goes beyond the mere fact ofbeing orphaned.
Long term impoverishment
The World Bank’s study in Kagera showed that even in “richer” households (and wemust not forget that these are all very poor communities) 29 per cent of non-orphanedchildren were stunted (had a very low height for their age) while 50 per cent oforphaned children were wasted. In poorer households 39 per cent of non-orphanedchildren were stunted while 51 per cent of orphaned children were wasted (WorldBank, 1997, 224). These figures point to the effects on all children of growing up in apoor society.
Stunting has long term effects. Foundations for future life are poorly built with poorphysical condition, compromised immune systems and mental functioning. This willaffect the ability of children to benefit from education and to function socially andeconomically later in their lives. It can cripple a society for a generation or more.
Orphans are less likely to have proper schooling. The death of a prime age adult in ahousehold reduces a child’s school attendance (World Bank, 1997, 225). Householdsmay be less able to pay for schooling.6 An orphaned child may have to take onhousehold or income earning work. Sick adults may have reduced expectations of thereturns to investing in children’s education, as they do not expect to live long enoughto recoup the investment. When a child goes to another household after its parents’deaths, the obstacles become greater as the child is not their own.
The standard of education that a child receives may be low. This is in part because ofthe under-resourcing of public education; it is also a result of the AIDS epidemic.
AIDS increases teacher deaths and they may be difficult to replace, particularly indeprived, rural or otherwise remote communities. Teachers’ illness is of particularimportance. Classes remain untaught for extended periods and replacement is difficultwhile staff members are on sick leave.
In Kagera children from poor households had the lowest school enrolment rateswhether they were orphaned or not. But orphaned children inevitably had lower ratesthan non-orphaned children. Differentials are striking. The enrolment rate for non-orphaned children between the ages of 7 and 10 from better-off households was 44per cent. But for orphaned children in the same age group and from poorerhouseholds, the rate dropped to 28 per cent (World Bank, 1997, 228).
Girls carry a larger burden of domestic responsibility than do boys and are more likelyto be kept out of school. As with much else about HIV/AIDS, impacts are inter-related: poor nutrition, poor care, and poor or little schooling affects orphans. Otherchildren in the community are affected by general household impoverishment.
Caring for children has costs. Taking in orphans increases demands on householdresources. In societies affected by HIV/AIDS many children live in households inwhich their own parents have fostered or are fostering orphans. In a study in6 In many countries fees are only part of the costs of attending school. There are book fees, buildingfees, PTAs, uniforms and of course the opportunity costs of time and labour foregone.
Buganda, southern Uganda in 2000 (Monk, 2000), 152 households were interviewed.
A total of 342 non-orphaned children resided in these units. In addition there were383 orphans. In the majority of cases there was no distinction between levels of caregiven to orphans or to the guardian's own biological children. Therefore, all childrenin the household suffer the same economic and other deprivations resulting fromspreading resources more thinly as a “coping” response to the epidemic.
AIDS disrupts social roles, rights and obligations. For the orphaned child there isoften a premature entrance to burdens of adulthood, all without the rights andprivileges – or the strengths - associated with adult status. Becoming an orphan of theepidemic is rarely a sudden switch in roles. It is slow and painful and the slownessand pain have to do not only with loss of a parent but also with the long term carewhich that parent’s failing health may require. Children who care for adults mayexperience a world gone seriously awry. A young girl of eight or nine may be used tocaring for younger siblings: she is unprepared to care for her mother, father or both ofthem. As well as the physical difficulties there are inevitably difficulties of cultureand sensibility. Coping with a parent who is weak and requires food cooked or waterbrought is one thing. Coping with a parent’s severe diarrhoea, declining mentalfunction and mood changes is quite another. Children also become uncommonlyfamiliar with death.
It is not only in relation to their own parents that children take on new and prematureroles. When they become orphans, they go to their grandparents or to anotherrelative. An aunt or uncle may also die of HIV/AIDS or a grandparent from old age.
Double or even triple orphaning is not unknown. It is all too common for quite youngchildren or early adolescents to be caring for aged and infirm grandparents.
These unmeasured consequences for the orphan generation are of great concern. Weare talking about unsocialised, uneducated and in many instance unloved childrenstruggling to adulthood. The cost to them as individuals remains unmeasured. Thecosts to the wider society are potentially enormous and already being felt and seen.
It has been speculated that the high levels of orphaning will lead to an increase incrime. This has been spelt out as follows for South Africa “AIDS and age will besignificant contributors to an increase in the rate of crime over the next ten to twentyyears. There will be a boom in South Africa’s orphan population during the nextdecade… Growing up without parents, and badly supervised by relatives and welfareorganisations, this growing pool of orphans will be at greater than average risk toengage in criminal activity.” (Schönteich, 1999, 1). At worst there may be increasedpolitical instability with orphans swelling the ranks of the child soldiers (Zack-Williams, 1999).
Poverty and Older People
Population ageing is now a global phenomenon and is set to accelerate over thecoming decades (Kinsella and Tauber, 1993). The standard definitions, populationaged 65 years or over, do not reflect the nature of old age in most of sub-SaharanAfrica (Apt, 1996; 1997) and other poor regions of the world and in poorcommunities. Limited life expectancy, poverty, hard work, frequent illness and, in thecase of women, childbearing, all result in relatively early onset of “old age”.
CHAPTER 11: POVERTY AND HIV/AIDS: IMPACT COPING AND MITIGATION POLICY In contrast to children who are orphaned or otherwise at risk, older people are lessappealing to donors. There is prejudice against older people and rapid social changeand “development” often places them in positions of severe disadvantage. Forexample, the migration of young adults from rural to urban areas means that theiradult children will not be around to look after them. The changed status fromrespected elder to burdensome old person is particularly likely when their children’sgeneration ceases to take traditional responsibilities seriously as they pursue newindividualistic lifestyles. The HIV/AIDS epidemic magnifies all of these problemsand older women face more difficulties than older men. Rural old women are amongthe populations most adversely affected. A measure of the degree to which the impactof HIV/AIDS on older people has been neglected is that we are aware of only onescientific study and indeed few other publications on this express theme7.
The main problem that confronts the elderly in a society affected by HIV/AIDS ispoverty. An inevitable second problem is grief. Grief and poverty go together for theold because the epidemic affects them through the death of one or more of their adultchildren. Older people are likely to be among the poorest in poor societies. Theirfailing powers make it more difficult for them to work on a farm or earn a living insome other way. They become increasingly dependent physically and financially inall societies and once again “the extended family” and its strengths can turn out to bemore myth than reality (Laslett, 1965; Gubrium, 1973, Foner, 1984).
Poverty and frailty are made worse in two main respects by the loss of adult children.
One is the loss of financial and other support that they could have expected and mighthave received. The other is the unexpected burden of orphaned grandchildren whocome to live with them.
In contrast, a rich older person can buy their way out of the worst effects of the deathof an adult child or children. Fieldwork in rural Uganda in 1989 identified anapparently prosperous elderly couple. In depth interviews elicited the following story:the couple had worked hard and saved by investing in their children’s education. Formany years they had enjoyed the fruits of their investment in remittances from theirson the headmaster, their daughter the nursing sister and their other sons, bothgovernment officials. Then one by one and in quick succession the children all died.
The couple found themselves hosting 15 grandchildren from under two years of age tomid-teens. Their solution was for the old man, now in his eighties, to take a youngwoman of 26as his second wife. This is one way of coping but it is restricted to therelatively rich. The reality for the majority of the elderly is quite different.
Old Age: poverty exacerbated
A detailed study of older people in Buganda (Williams, 1998) illustrates graphicallythe conditions which the elderly endure in a rural society in Africa. They have poorhousing and are often unable to build anew or to repair what they have. Poor housingmeans poor security and loss of food and other valuable items to insects, animals andtheft. Preparing and cooking food can present challenges. Within their homes, poorold people may not have sufficient bedding to stay warm at night. One of Williams’7 We arrive at this conclusion through a careful literature search which turned up fewer than 10 articles,theses or book. Only Williams (1998) presents extensive and detailed data.
respondents told him: “I sleep on a bark cloth on the ground and I cover myself withmy dress. I’d sleep better if I had a blanket.” (Williams, 1998, 140). Another said:“The problem is that I don’t have the strength to carry pots from outside and I amafraid I will fall over. I used to have it (the kitchen) outside, but it was hard to get inand out of the door at night, and once I fell over. So now I have it in here, but I stillfall down sometimes. When I cook near my bed I can cook lying down and that iseasier.” (Williams, 1998, 138.) Old people living alone face considerable difficulties obtaining water for washing,cooking and drinking. Failing adequate water supply, the results for the elderly mayinclude: thirst, hunger because there is no water with which to cook, dirty clothes,lack of personal hygiene, intestinal worms associated with poor sanitary conditions(Williams, 1998, 143). Another constraint is fuel wood. This is a very labourintensive and demanding task and old people often find it hard to obtain enough. Theresult of this combined with falling ability to produce food from the farm or purchaseit is inadequate diet.
The elderly are dependent. Dependence requires support. Support is found in sociallife. Social life requires energy and inputs if it is to be maintained and reproduced.
The elderly lack energy to make these investments. That is why children areimportant and why when they die and their work, remittances and other support cease,the circumstances of an old person can decline dramatically. What then happenswhen the grandchildren come to live with them? Old age and Orphans
Williams suggests that “Old people are affected by the epidemic more through thefulfilment of their parental obligations than the loss of their children’s support.”(Williams, 1998, 230). First of all they care for their children who are sick. Then theybury them. Finally they care for their grandchildren.
In Uganda8 as long ago as the late 1980s aged grandparents had increasingly assumedresponsibilities for rearing orphans. Lack of energy to work in the fields meant therange of food available to them and their dependants became smaller and nutritionalstatus became worse. Many grandparents with orphans said they faced problems ofdiscipline. Young people were to be found playing truant in the nearby town and wereidentified by members of the community as orphans coming from grandparent homes.
But sometimes it is the sheer numbers of orphans who come to rest in the grandparent’shousehold which overwhelm its capacity to offer material and emotional care.
Young trees make a strong forest (Kiganda proverb9)
It is estimated that by 2005 just over 30 per cent of Malawi’s children will be orphansbecause of AIDS and other reasons: by 2010 that will have risen to 35 per cent 8 This section is based on fieldwork by Barnett and Blaikie in the late 1980s. It describes a situationthat has not altered very much if at all and which is now more widespread in Africa and elsewhere thanwhen these notes were first made.
9 Williams, 1998, 216.
CHAPTER 11: POVERTY AND HIV/AIDS: IMPACT COPING AND MITIGATION POLICY (Hunter and Fall, 1998, 7). The situation in Malawi is no worse than in any othercountry of East, South and Central Africa, indeed it may be better.
The breakdown of inter-generational dependency and support is not unique to anHIV/AIDS epidemic. It has been commented on in many countries of Europe(Carmichael and Charles, 1999). Provision can be made through the market or thestate in rich countries. Poor countries have not and cannot provide support nets fortheir people. There is little in the way of public provision. People cope by caring forthemselves in households and in communities as best they can.
The HIV/AIDS epidemic confronts us with a new situation. Societies remain poorand will be further impoverished by the epidemic itself. The growth of dependentpopulations and the disappearance of mature adults erode the possibilities of “coping”at the local level and nationally. This is apparent all over Africa but also elsewhere,for example in Ukraine. Ukrainians have the oldest average age in Europe, and percapita one of the largest numbers of pensioners. Under the Soviet system a pensionwas provided by the state. Money did not come from investments but from currentrevenue. The dramatic decline in government revenues since 1991 has been reflectedin a decline in the real value of pensions as well as delays in paying them. Not onlyare the old poor and without any substantial social safety nets, but because of theunfavourable dependency ratio they are unlikely to have either family or stateprovision in their final years. Our calculations suggest that as a result of theHIV/AIDS epidemic, there will be an additional 30,000 totally unsupported oldpeople in Ukraine within ten years (Barnett and Whiteside, 1997).
The evidence from Africa and from Ukraine shows that a serious situation exists inboth places. Throughout Africa the intergenerational bargain is becomingprogressively harder to maintain. The outcome is awful for the people themselves; itslong-term effects have to be imagined as one and possibly two generations of childrengrows up with inadequate care.
The Policy Response
“Our extended family system will cope with orphans” people used to say in Africa inthe early 1990s. In Uganda it was realised and accepted by the mid-1990s that “theextended family” system was (a) various and variable (b) often not coping.
Institutional care is unacceptable to people in Uganda and in most other parts ofAfrica. It is necessary to find ways to care for orphans within family and householdsystems that have been increasingly stretched, using institutional care as a last resort.
Institutional care has a bad name in some places where “orphan farming” hasdeveloped as an income generating activity (Barnett and Blaikie, 1992).
An assessment of the cost of orphan care in South Africa looked at six differentapproaches. The costs are summarised in Table 3.
Table 3: The Cost of Orphan Care in South Africa. (Rand $1 = R8.2)
Care Model
Cost (minimum
Increase
Reason for increase
standard)
-Process for identification-Process for placement and grant access -Quality of accommodation-More administration -High staff to child ratio-Provision of emergency care-Care of sick children -Meet statutory requirements for achildren’s home-High over heads-On site medical care-On site pre-school education Source: Desmond and Gow, 2000.
There is a wide range of care options, from the less costly informal to the more costlyformal care models. Although community based care and home-based care andsupport appear to be the most cost efficient ways of caring for orphans, these modelsare not always appropriate or feasible. Appropriate resource allocation – a politicaland practical issue - is a major limitation to be addressed if the basic needs of thechildren are to be effectively met by informal family orientated care models. Inaddition, the appropriateness of the less formalised care options in caring for childrenwho may be sick or suffered abuse needs to be considered.
It is difficult to know how to support households with AIDS orphans. Targeting themis neither practical nor desirable and is potentially stigmatising. It could also meanthat other orphans and their carers – with the same needs – would be excluded frombenefits. The majority of orphans are in poor countries where even the better offhouseholds are poor by the standards of rich countries. The problem is how to supportall orphans and other vulnerable children more effectively in such contexts.
Botswana has the highest levels of infection of any country. It has a major orphanproblem. Current discussions concern whether state intervention or institutional careare appropriate. As in Uganda 10 years ago, so in Botswana today. People say thatfostering and institutional care are not part of the tradition, that the extended familywill cope (Jacques, 1998, quoted in Rajaraman, 2001). But “(t)he Rapid Assessmenton the Situation of Orphans in Botswana tells a different story … of orphan suicides,destitute children eking their living out of garbage dumpsites, and a growing numberof child-headed households. In a context of intense social and economic pressures,orphans are increasingly reported to be mistreated and abused by caregivers; deprivedof their inheritances by opportunistic relatives and neighbours; forced to drop out ofschool to perform domestic labour or bring home wages; pressured into enteringcommercial sex work and vulnerable to sexual abuse.” (Rajaraman, 2001).
CHAPTER 11: POVERTY AND HIV/AIDS: IMPACT COPING AND MITIGATION POLICY Although the government offers some additional support for orphans, carers aresometimes reluctant to accept this assistance, particularly if acceptance may identifythe dead parent as having died of AIDS. Or it may suggest that the family cannotcope, another stigma. Given the possibilities of abuse, neglect and poverty,Rajaraman suggests that the Government has an obligation to intervene, in order toprotect the human rights of the children involved.10 This does not imply overridingtraditional systems of caring for orphans; it will, however, mean developinginstitutions to monitor, support and supplement them. But despite considerablerhetoric and funding, the Government of Botswana does not appear to have mobilisedsufficiently to develop a structure of care for orphans. NGOs and particularly thechurches are bearing the heaviest load. The Government has not yet introduced aneffective system either for registering orphans or for ensuring that different ministries’activities are co-ordinated to provide effective support. This is the situation in one ofAfrica’s wealthiest countries; it is far worse in the poorer countries of the continent.
As the epidemic’s range increases, these problems will appear elsewhere. In Calcutta,India, there have been reports of numerous AIDS orphans for some years11 while inUkraine, the predicted number of AIDS orphans in the next five years may welloverwhelm existing institutional provision (Barnett, Whiteside, Khodakevich,Kruglov, Steshenko, 2000, 1399). The Ukrainian case is of particular concern as thesituation there is replicated in all of the former Soviet Union – implying a vast orphanpopulation from the Polish border to Vladivostok12. A visit to a Ukrainian orphanagein 2001 made the implications of this painfully clear. Children who have spent theirchildhood in an institutional regime that is simultaneously under-funded and derivingfrom the Soviet tradition cannot make a satisfactory transition to the world outside atage 16. This is particularly so when the Soviet support services of health care,employment and housing have disappeared. The deputy-Director of the orphanagewas close to tears when describing the trauma for staff and orphans of pushing thelatter out of the institution when they reach 16. In economic and social terms, in the“transitional economies” of the Former Soviet Union, the potential costs of “theorphan problem” which existed before HIV/AIDS but which will be exacerbated by it,is very large indeed. There are the immediate problems of institutional care, the costsof assisting the transition from care to adult life (a transition which will fail in many ifnot most cases), and finally the costs as these neglected people make their waysthrough their societies, in most cases to a premature death.
Current responses to AIDS related impoverishment
There have been very few explicit responses to the social and economic impact ofHIV/AIDS. Most effort and money has gone into prevention. While this was asensible response the balance between prevention and impact mitigation responses hasbeen wrong– particularly when it has been clear for at least a decade that there wouldbe long-term social and economic impacts. Here we review what is known about thepossibilities, limitations and prospects for responses in general. We then go on tomake some concluding and inevitably brief observations about poverty relatedresponses to HIV/AIDS.
10 Botswana became a signatory to the United Nations Convention on the Rights of the Child in 1995.
11 Personal communication from Veena Lakhumalani12 The first thing to say is that most responses to poverty related impacts of HIV/AIDShave been at the local and community level. There are few records of poverty relatedresponses at the regional, national and most certainly not at the international level.
From the earliest days of the epidemic the tendency has been to move with thedominant neo-liberal ideology and to phrase response in terms of “coping’. This ishas been inadequate because – as noted above - the concept itself has severelimitations.
Current responses and the myth of coping
Like sustainability, the idea and language of “coping” has to be questioned in relationto HIV/AIDS and its impacts. Yes, people “cope”, the alternative - not coping -means households dissolving or people dying. But it is odd and indeed offensive forthe wealthy to suggest the poor should “cope” and the rich will show them how to doit. The idea of “coping” originates from the unwillingness of the rich to do anythingmore than apply sticking plaster to the wounds of global inequality when what hasbeen required for a very long time is expensive surgery. This surgery requires majortransplantation and reorganisation of resources.
Rugalema (2000) argues that coping is often a myth because: 1. Many households affected by HIV/AIDS do not cope. On the contrary, they break up and their members, orphans, widows and the elderly, joinother households.
2. It is not households that cope – rather it is individuals within them who 3. There may be precious little in the way of “strategies” about how people manage crises. Rather the decisions made by household members maymerely reflect efforts to survive in the very short term.
4. Short-term solutions to crises – sale of household assets, withdrawal of young girls from school to help with domestic and farm work - have longterm effects and costs. These may include lower or no educationalachievement, poor diet with associated stunting or wasting, lack of careand poor socialisation.
5. The impact of a large-scale event such as an HIV/AIDS epidemic has effects on wider social, economic and even environmental systems. Forexample, in a community or region that is hard hit, there are changes andcosts at the levels of the farming system, social infrastructure and themaintenance of physical infrastructure. These all point to generalimpoverishment in many dimensions.
6. The effects of “coping” are shouldered unequally between poorer and better off households, men and women, generations, and different socialgroups and geographical regions.
Why use the term “coping? It originates in literature about individuals and how theycope with stress (McCubbin, 1979; McCubbin, 1980). It has been used to discussfamines (Watts, 1983; Corbett, 1988; De Waal, 1989; Devereux, 1993). Other rootslie in ideas from social work and childcare. Here the notion of “good enough care”(Winnicott, 1965) emerged in the 1960s. It was an attempt to sensitise social workersto the idea that, while their clients’ standards of care might appear inadequate by their CHAPTER 11: POVERTY AND HIV/AIDS: IMPACT COPING AND MITIGATION POLICY own social and cultural standards, the clients’ was “good enough” as long as everyonewas “coping”.
In relation to HIV/AIDS, the story of coping mechanisms is really a part of the widerstory of structural adjustment policies – before they began to be offered “with ahuman face” (Mehrotra and Jolly, 1997). Rugalema hits the nail on the head when hesays that the concept of coping strategies is rooted in the neo-liberal worldview of the1970s and 80s. Non-intervention by governments and freedom or autonomy ofeconomic agents to participate in the market were fundamental points of departure. Asthis worldview dominated that period, not least due to the influence of Reaganomicsin the US and Thatcherism in the UK, so the concept of coping strategies gainedcredence (Rugalema, 2000, p 5).
It is well-known that human societies have developed and continue to develop“coping mechanisms” and risk sharing mechanisms for dealing with adversity, it isalso well-known and evident that there are severe limits to those mechanisms, thatthey do break down. The notion of a “coping mechanism” can surely only bemaintained when a society or community remains able to meet its needs at someculturally acceptable level – hence the importance of the distinction between “famine”and “famine that kills” (De Waal, 1989) among dryland people in Darfur whodistinguish between “mere” famine and the other type. Coping becomes impossible.
It is for these reasons that we are sceptical about and critical of the all too frequent useof the term “coping mechanism” derived as it is from disaster theory and in particularfrom famine theory (Rugalema, 2000). The notion has limitations when applied tofamines and implies a rational response following logical processes of retreat in theface of a shock. It is a notion that fits comfortably with neo-liberal ideologies thatassume and often implicitly make moral judgements about the desirability of aparticular calculating stance towards the world on the part of individuals andhouseholds. “The Little House on the Prairie” comes rapidly to mind, but the pointhere is that for each little household that made it into literature, there were others thatperished. This becomes downright cynical when very poor people are told that theyare “coping” and their strategies are studied and reported to little purpose other than toprovide assurances to major lenders such as the World Bank that their policies are insome sense working.
We have underlined the social roots of the HIV/AIDS epidemic and the social andcultural filters through which its impacts manifest themselves. Coping is aboutdealing with risk. Risk is not equally distributed. It is constructed for individuals andsocio-economic groups through complex processes of economic, social and culturalrelations. The constant struggles to survive that characterise the livelihoods of somany do not leave room for coping in the extraordinary circumstances in which manypoor people live. That is what they do every day of every year. That is the nature ofpoverty. And when the big crisis hits them they do not cope. Thus, to talk of suchpoor people “coping” is to cross the line between technical appreciation of what ispossible and barely disguised cynicism and clear acceptance that different groups ofhuman beings can only be offered second, third or worst best options. It is to acceptthe unjust structures of distribution in the world. A term such as “coping” may be away of escaping from the challenge of confronting how people’s capabilities arestunted, their entitlements blocked and their abilities to function as full human beingswith choices and self-definitions frustrated.
Transfer interventions
We have already noted that little is known about responses to HIV/AIDS inducedpoverty. This is for three reasons: § There have been no large scale interventions§ Most interventions have been small scale, community based (often components of “coping”) initiated by CNGOs, NGOs or in a few cases(such as Action Aid) by BINGOs (Big NGOs - major international actorssuch as Oxfam, World Vision, Save the Children or Care).
§ Above all because the interventions have not been documented.
Most interventions have been small scale. It is only in the last year or so that large-scale programmes are coming into existence. This is evident most of all in the WorldBank’s Multi-Country AIDS Programme Africa (MAP) which had approved nineprojects funded by the end of 2001 and a further 16 in the pipeline. Despite theefforts of the ACT Africa (AIDS Campaign Team for Africa) group in the WorldBank who have been responsible for pushing this initiative, what is most significantabout it is that so little is being done so late in the epidemic – particularly given thelavishly funded Kagera household study which was done almost a decade previously! Current (November 2001) World Bank publication about the MAP project (WorldBank, ACT Africa, Multi-Country HIV/AIDS Programme for Africa, November2001, CD-ROM) provide information about nine programmes13 funded by theinitiative. While these programmes are broad ranging and indicate that impact issuesdo at least figure in addition to prevention measures, none of the programmes seemsto have poverty related transfers as a focus for their activities. It is not that transfersare excluded – they could be included in a large number of community basedactivities which might be funded. Rather it is that transfers are an option rather than arecognised component of the strategies that have been jointly developed for eachcountry.
This is an interesting situation. The Bank is responding to pressure and opinion. Itsactivities in this sphere are in fact quite limited and these soft loans are not large, feware much bigger than a few tens of millions of dollars and even Nigeria’s is under$100m over 5 years repayable over 35 years. The Bank is endeavouring to respond tolocal need and to make the process participatory (as between government and funder)and yet despite the best efforts of the ACT Africa team programmes remain not onlyprescriptive but prescriptive to a degree which appears to reduce the possibilities fortransfer programmes. This is clearly shown in the following outline of what theoverall programmes are intended to cover: “The proposed project will support key components, including: § Prevention, including information, education, and communication
(IEC) for specific target groups, condom promotion, voluntary 13 Burkina Faso, Cameroun, Ethiopia, Eritrea, Gambia, Ghana, Kenya, Nigeria, Uganda.
CHAPTER 11: POVERTY AND HIV/AIDS: IMPACT COPING AND MITIGATION POLICY counselling and testing for vulnerable groups of the population;participatory approaches to behaviour change; Care and treatment, including the treatment of STIs and
opportunistic infections such as TB; strengthening the availabilityof and access to essential drugs, training of health workers, clinicalmanagement of HIV/AIDS-related conditions, and support to homeand community-based care and support activities; ensuring a safeblood supply through improved screening and blood transfusion; Research and surveillance, including baseline surveys of
epidemiology, knowledge and behaviour, improved HIV sentinelsurveillance to monitor the epidemic, and analysis for the designand implementation of cost-effective interventions; Capacity building
management, and implementation at all levels; and The establishment of sound monitoring and evaluation systems to
enable program implementing agencies to monitor performanceindicators for each component of their programs.” (World Bank, MAP, 2001, file MAPOperation, p. 4).
This initiative is important but it raises some very important questions about povertyrelated interventions. A key idea in the World Bank’s approach is “scaling up” oflocal level initiatives. For some time this has been pushed hard by Hans Binswanger(Binswanger, August 30 1999). The approach has some difficulties. On the one hand,large lenders like the Bank have to be seen to disburse large amounts of money; onthe other, scale may not always be easily combined with the specificities of localcircumstances and with requirements for national and community ownership ofprogrammes and projects. So, the need to respond on a scale in keeping with theperceived urgency of the situation may not necessarily result in projects that reallymeet local needs.
Interventions have mainly been small scale and under the auspices of NGOs of onekind or another. These have not been described in any detail and have rarely beenevaluated. Here we summarize a number of these in case study format.
i. The Firelight Foundation (www.firelightfoundation.org): this US based
organisation operates on a very small scale and concerns itself with children affected
by HIV/AIDS. It gives one year grants of $500 to $20,000 to grassroots, community-
based projects directly supporting the fundamental needs and rights of children
orphaned or affected by HIV/AIDS in sub-Saharan Africa. These projects have aimed
to train children, pay school fees, and in some cases provide food and medicine. The
organisation has been active in Kenya, Rwanda, South Africa, Tanzania, Zambia and
Zimbabwe. Its activities up to an including the year 2001 are summarised in Table 4.
Projects in which some type of transfer can be said to take place are italicised.
Kenya
Rural Education and Economic Enhancement (REEP), Butula District

The grant will provide guardians and foster parents of orphans: training in counselling, project
management, and savings programs as well as offer food aid. They will also train orphans in
vocational skills, project management and reproductive health.
Teenage Mothers and Children Family Health Care (TEMAC), Eldoret
The grant provides food and medicine for the children.
Catholic Diocese of Kitui-Orphan Support Program, Kitui
The grant will assist the program to train social workers and orphans , purchase drugs and provide
other social programs.
WiRED, Advanced Technical Assistance to Orphans, Mombasa
The grant will train six AIDS orphans in a pilot program of computer learning at a conference in
Mombasa.
Community Resource Mobilization Initiative Group (COREMI), Raibai
Funding will offer vocational training for 20 orphans, and counselling and training for 45
community AIDS educators.
Kibera Community Self Help Program (KICOSHEP), Nairobi
The grant provides for orphan support through KICOSHEP's various programs.
Child Health Program—Bactrim, Kendu Bay, Kenya
This Firelight Foundation grant will be matched with $7,000 from Global Strategies for HIVPrevention to support the Child Health Program of Kendu Bay, Kenya. The grant will provideBactrim for 200 children and 100 adults for one year as well as covering HIV screening tests, fuel forthe doctor and funds for home visits.
Rwanda
Association de Chef de Famille: Giribanga-Bakery Project, Kigali

Funding will cover: equipment, personnel costs, raw materials, and a five-day training program for100 children in micro-projects, their rights and the law.
Benishyaka Association's Education Sponsorship Program for Orphans, Kigali
Benishyaka Association focuses on the needs of widows and orphans who are victims of the 1990
war and the 1994 genocide for the betterment of their welfare. The grant will cover one year of
school fees and related expenses for 150 children.
South Africa
After School Program for Orphans, Alexandria Township

The funds will purchase supplies for an after school tutoring program and bereavement art program
for 40 children, several of whom are also participating in a Firelight funded pen-pal program with
Anzar High School in California.
Botshabelo Babies Home, Midrand
http://www.botshabelo.co.za
The grant will pay for half of the yearly salary of a social worker, the cost of two caregivers and
some operating costs.
South Coast Hospice's Memory Book Project, Port Shepstone
The funds will provide 200 rural children about to be orphaned with a Memory Box. The boxcontains a letter from their mother giving her hopes and dreams for that child, along with photos andother small mementos.
Tanzania
Activities Related to AIDS Orphans, Musoma

The grant will make available services to 140 orphans and vulnerable children including:
educational, counselling and support services, material aid to attend school and peer education
programs to improve community outreach.
Education for AIDS Orphans & Peer Education and Service, Musoma
Youth Alive Program, Musoma
The grant covers school fees and related expenses for 30 orphans. The Youth Alive Program grant
covers the purchase of six bicycles, the coordinator's salary and an emergency fund for people with
AIDS. The Youth Alive Program trains youth outreach volunteers to visit rural people ill with
HIV/AIDS.
School Fees & AIDS Out-Reach, Mwanza
Funding will assist more children to attend primary school through the provision of fees and food
assistance
. In addition, the Youth Alive group will be able to continue programs, plays, and training
to teach other young people about the dangers of HIV/AIDS.
CHAPTER 11: POVERTY AND HIV/AIDS: IMPACT COPING AND MITIGATION POLICY Zambia
Anglican Street Children Project, Lusaka

The grant will enable the Project to provide counselling, school needs (books, uniforms, pens, and
shoes)
and other basic necessities of the children as well as providing outreach to their parents and/or
guardians.
Fountain of Hope Shelter for Street Children, Lusaka
The grant will enable 40 mothers to receive business skills training and seed money for small
businesses. Helping mothers is one of the most sustainable ways to help orphaned children. The
grant will also pay for 32 children to attend one year of secondary school.

Zimbabwe
Salvation Army Masiye Camp, Bulawayo

http://www.masiye.com
With the grant, Masiye Camp is establishing an emergency fund, which will assist over 200 of the
most needy orphans.
Child Protection Society, Harare
The grant will fund three desktop computers, one printer and supporting software as well as vehicle
costs.
Girl-Child Network-Safe House & Training, various locations
The grant will enable the Girl-Child Network to establish its third safe house for girls escapingsexual abuse in the village of Rusape. It will also cover the cost of a counselling workshop dealingwith sexual abuse for club coordinators.
Island Hospice-Children's Support Program, Harare
The grant will pay for training and support to institutions and communities involved in the care of
terminally ill children and orphans. The training includes grief and bereavement counselling and
therapy for caregivers of children and support sessions for bereaved children.
Discretionary Grants
Girl Child Network, Zimbabwe
To support the cross training of two women from Fountain of Hope in Lusaka, Zamiba to provideservices for the vulnerable girl-child.
Girl Child Network, Zimbabwe
For miscellaneous educational expenses.
Children Affected by AIDS Foundation, Los Angeles, California
To further their work with children.
AIDS Outreach Program, Tanzania
Paid shipping costs of donated children's books for distribution in local schools.
Paediatric AIDS Foundation, Santa Monica, CA
Funding for Call to Action, a project to reduce the rate of mother-to-infant
transmission through: community education, health care worker training, HIV
counselling and testing, and the provision of antiretrovirals to prevent
MTCT.
There is no evidence that this programme and its associated projects have beenexternally evaluated.
ii. CINDI – Children in Distress (www.togan.co.za/cindi/)
An informal South African consortium of more than 30 government and non-
government agencies, this organisation collaborate around the issues of children
affected or orphaned by AIDS. It is supported by the Department of Welfare and
Population, Kwa-Zulu Natal and the Nelson Mandela Children’s Fund. The
organisation does not set out to make transfers but it does provide some schoolscholarships for children in South Africa, as well as providing access to anddispensing some medicines. It also gives some free toiletries and disinfectants. Itsactivities are small scale and community oriented. There is no evidence that theprogramme and associated projects have been externally evaluated.
iii. Aids Orphans Education Trust (www.orphanseducation.org): This is a
Ugandan NGO. Its aim is to provide an education either formal and/or vocational to
poor children whose parents have died of AIDS. It certainly makes a variety of
transfers, including support for school fees, school materials and clothes. The AOET
also provides support to widows in the form of blankets, food, laundry soap as well as
clothes for families of sick people or families caring for orphans. There is no evidence
that the programme and associated projects have been externally evaluated.
iv. International Fund for Agricultural Development (www.ifad.org ): this
specialised agency of the UN provides micro-credit to rural communities especially in
Uganda. IFAD works through a partnership with the Belgian Survival Fund and
UWESO (Ugandan Women’s Effort to Save Orphans). The associated UWESO
Development Project has enabled 2000 young children to attend primary school and
has provided vocational training for older children. There is no evidence that the
programme and associated projects have been externally evaluated.
v. USAID’s Community-Based Options for Protection and Empowerment
project (COPE) project in Malawi:
this project is interesting because its aims are
not to make transfers but rather to facilitate communities’ potential to develop income
generating activities and to make internal transfers – for example through the creation
of food banks. The project was evaluated in January 1999 (Lloyd Feinberg,
Namposya Serpell, John Williamson Review of the COPE IIand OVC Programs in
Malawi,
January 8-24, 1999, Displaced Children and Orphans Fund and War Victims
Fund Contract (HRN-C-00-98-00037-00), for USAID). An important question
arising from this type of project is whether in many cases where the epidemic and its
impacts are already very well advanced, such an approach is more in keeping with the
ideological needs of the ultimate funder rather than meeting the requirements of the
communities and households affected by the epidemic. Once again, Rugalema’s
comments about “coping” must come to mind.
vi. Association François Xavier Bagnoud (AFXB) Micro-Grant and Education
Program for Orphans :
The AFXB programmes – among the earliest to respond to
the HIV/AIDS epidemic - helps families who are caring for orphans by providing
micro-grants for income-generating purposes, paying for the primary education of one
orphan per household, and educating people in hygiene, basic health care, and the
rights of widows and children. They operate their programme in three sub-counties
around Luweero, a town 70 miles north of Kampala, Uganda, where many children
have been orphaned by AIDS or civil war.
Each autumn, the 90 neediest families in each sub-county are offered a one-time $100grant for the income-generating activity of their choice. Because of the lush grazingland, about 80% of the families elect to rear animals, with the remainder primarilyengaged in coffee or banana cultivation. Rather than providing their clients with the$100 in cash, AFXB social workers purchase the agreed-upon goods for them. AFXB CHAPTER 11: POVERTY AND HIV/AIDS: IMPACT COPING AND MITIGATION POLICY hires a veterinarian to select the healthiest animals and, since they are buying 30 to 40cattle at a time, AFXB can negotiate the best deal.
An Evaluation Survey in 1999 found that over 80% of the AFXB micro-grants givensince 1992 have met the objective of increasing the income of the families taking careof orphans.
AFXB pays for the primary education of 3,060 orphans per year. The school fees arenot paid in cash, but the PTAs determine what is most needed at the school (i.e., anew classroom, desks or books) and AFXB pays the labourers for building theclassroom or provides the desks or books directly to the school. In addition, AFXBholds a competition among each year's Primary 7 (7th grade) class, and the top sixstudents are given scholarships to secondary school. The rest are eligible forvocational training.
AFXB relies upon a committee of volunteers to run their program. Each localcommittee area of guardians elects one spokesperson to represent them on the 50- to60-person steering committee. The steering committees recommend the neediestfamilies for the micro-grants, keep an eye on the orphans, monitor how the income-generating activities are working, coordinate with the schools, and provide regularfeedback to the social worker running the AFXB program in each sub-county.
This approach makes transfers, ensures that they are under community control anddirection and works on a small scale. It is an approach which once more throws intosharp relief the problems of “scaling-up” as it deals in micro- level interventions anrequires close attention to the role of the local steering committee.
Conclusion
We have emphasised that the relation between poverty and HIV/AIDS and HIV/AIDSand poverty is bi-directional. There is much conceptual confusion about the nature ofthe relationship, perhaps pre-eminently because so little rigorous research has beendone but also because of the ideological emphasis on “coping” which informed muchthinking about and response to the social and economic impact of the epidemic duringthe 1990s. Another factor was the general reluctance among academics and policymakers to take the issue of broad epidemic impact seriously. All too often theydemanded “scientific evidence” of impact, research which was rarely funded butwhich has now been provided by the unavoidable results of twenty years of impact onpoor communities across the world but disproportionately in Africa.
In the early 1990s a very few NGOs (Action Aid, SCF UK and FXB among them)began to do something about the impact of the epidemic on poverty. By the late1990s, more agencies took the issue on board – but few major multilateral or bilateraldonors among them. It has been the NGOs that have made the running in providingtransfer based interventions. Their activities have been small scale, variable in goalsand intentions and usually unevaluated.
In sum, little has been done to respond to the impact of HIV/AIDS on poverty, weknow little about it and have no idea whether these responses can or ought to be“scaled up” or how to do that.
CHAPTER 11: POVERTY AND HIV/AIDS: IMPACT COPING AND MITIGATION POLICY References
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